The Spoon Theory and Fabry Disease
Health Insights
Fabry disease can lead to problems at home, school, work, and everyday life. The disorder affects your whole body and can cause intense bouts of pain, a skin rash, ... Read more
Video Games Connect Chronically Ill Children Isolated at Home, Hospital
cystic fibrosis, News, syndicated
Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then the COVID-19 pandemic struck, and her perspective changed. Riva’s ... Read more
Unity and EU-wide Efforts Focus of Online Rare Disease Meeting
News, syndicated
Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. ... Read more
Genetic Counseling for Fabry Disease
Health Insights
If you or a family member has Fabry disease, you might benefit from genetic counseling. What is genetic counseling? Genetic counselors can talk to you about your risk of ... Read more
FDA Gives Fabry Gene Therapy, FLT190, Orphan Drug Status
News
The U.S. Food and Drug Administration (FDA) has designated FLT190, an investigational gene therapy for Fabry disease, an orphan drug to support and speed its development and possible review, Freeline Therapeutics, its ... Read more
Rare Diseases Clinical Research Network Opens Online Survey on COVID-19
News, syndicated
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. ... Read more
Vitamin D Deficiency and Fabry Disease
Health Insights
Fabry disease is a rare genetic disorder caused by a type of fat building up in cells, damaging the heart and kidneys. Vitamin D and Fabry disease The heart ... Read more
I Always Have Something to Be Thankful For
Columns, The Fabry Files - a Column by Eunice White
As of today, my family has spent seven weeks staying at home due to the coronavirus pandemic. We are seven weeks into home schooling (with one fantastic week off ... Read more
NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts
syndicated
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the ... Read more
Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak
Announcements
FFF Enterprises and BioNews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and ... Read more